I made it to 5mg Pred nine months ago, having taken nine months from diagnosis when I started on 15mg and very quickly got to 10mg following GP's plan. I found this forum and GP was very happy to let me titrate at my own pace following DSNS. (He even picked up DSNS from me and used it for other patients).
I was down to 4.5mg seemingly without a hitch by 1st Feb this year but flared on the first week of a taper to 4mg. Back to 5mg where I stayed for 6 weeks. Another DL taper helped me to arrive at 4.5mg by 20th April where I sat for 3 weeks before attempting the next ½mg. Two weeks into that taper another flare so back to 5mg where I stayed for 6 weeks before starting a 7 week taper to 4.5mg. This was interrupted by a chest infection and so sick day rules which meant I started that taper again. I finally made it back to 4.5mg on 23rd August and a week later I commenced another DSNS to 4mg.
Last Saturday I had my flu vaccination. Treading carefully, I spent the rest of that day in my recliner chair followed by most of Sunday and then all day Monday in front of the TV as most of you will have done. Over those 3 days I had experienced an abnormally runny nose and productive chest (I have perennial rhinitis and bronchiectasis so am so stranger to excess mucus). In addition there was some piriformis pain in bed, particularly in the right hip - a weak point. (Not greater trochanteric pain, I have had that in the past and know the difference).
Tuesday morning, bilateral pain in buttocks and shoulders and right leg weaker than usual so I am now back up to 10mg for a few days and will then see if I can get back to 4.5mg and stay there for goodness knows how long! It looks as though this is the dose I need to stay on top of the inflammation.
I have not reported this to my GP as, with all the wisdom and knowledge I have absorbed from this forum, I believe I am on the right path. I have never seen a Rheumy. My Pred dose is low enough not to be too concerned about and MTX is probably not indicated.
AND I have my Covid booster (bivalent I presume) booked for this coming Saturday! Apart from the first dose which was the final straw that triggered PMR I have not experienced anything more than a sore arm with doses 2 to 5.
Thanks for reading thus far!
Does my story echo anyone else's experience? Do any of our experts have any advice to offer or possibly feel able to bless my approach?
Arthur